Some Advice Please On What Next?

[s-pot]

Hi guys

POTS has taken a turn for me this week and i had my second partial seizure in less than a week last night

Im not sure what to do about it now.

My GP hasnt got a clue about POTS so i reckon there is really no point in going to her. I have a consultants apointment in 3 weeks but the consultant is just a Medical doctor at a small hospital where im from in Ireland. He has some knowledge of POTS but is by no means specialised in anything related to autonomic nervous system. pots or anything related. He is actually a geriatric specialist...and im pretty sure at 25 i dont fall into his usual case load of patients!!!

I was diagnosed by the 'poor mans' tilt table test back in march...put on midodrine and only for i spent time researching myself and providing him with information id be in the same position i was before diagnosis i reckon!

I think i need further testing but i dont know what that should be. I want to be referred to a more specialised doctor but I havent got a clue what type of specialist would be the best to request.

The seizures scared me, esp last night. Uncontrollable twitching and spasming down my right hand side....and last night when the seizure stopped, pins and needles started the whole way down my legs, they went dead and i lost movement for a couple of minutes.

So i would really appreciate any advice ye could give me on what I should do next??

Thanks guys!

[juliegee]

s-pot-

Sorry this has happened again- very frightening. I recently responded with some ideas to your last posts. I'm not sure if you read them. They may help. Another thing that comes to mind is low potassium. That can lead to seizure-like activity... Does your BP run low? I'm wondering if you need to boost your blood volume.

Hugs-

Julie

[s-pot]

Julie thanks so much for your responses....i just got a chance to read your comment on the other post!

Yes it is very possible that this could be whats happening. I am female and the pelvic congestion suggestion is something i had not considered althou i know my symtoms get alot worse when my cycle changes.

Also, I dont know about hypovolemia, i try to drink as much water as i can during the day but probably not enuf!! I work as a midwife and am v v busy during the day...i often forget to keep stopping for water breaks! plus i be peeing all day too, it can be hard get toilet breaks too!! Babies just wont wait . What can i do to aid with hypovolemia i.e keep more fluid in my body, without having to drink the gallons of water during the day? I probable manage 1.5ltr at the mo.

I know for sure my BP takes big dips suddenly. After last nights seizure I kno a little bit more, it happened when i turned over flat on my back, was very tachy and bed not tilted. So I reckon the seizures havto do with sudden drops in BP, lack of oxygen in some parts of my brain leading to this seizure activity.

Im just wondering what should I do with this. I defo feel a change in POTS in recent weeks, less vomity/gaggy and more fainting/dizzy/head pressure/uncontrollable twitching. Is this seizure activity common in those with POTS? Or should i head down the road now of trying to find out is the POTS secondary to some other issue?

Sorry for all the questions! Ive been dealing this and searching for answersfor a long time now. I was happy to get diagnosis of pots and having a positive mental attitude has helped me get bak up on my feet. BUT its wearing me down now n I aint so optimistic anymore...im very fed up of feeling awful!!

[juliegee]

Well if the twitchyness is due to very low BP- lack of oxygen to your brain; you need to work on boosting your blood volume. Drinking water was NOT enough for my son. At his worst, he also had to take TWO salt/potassium tablets called Thermotabs with each meal (SIX a day!) AND a pretty high dosage of florinef, 0.02mg. Maybe consider asking your doc if you could try florinef. Be sure to start with a low dosage, like 1/2 of a .01 tablet. It only works if you add extra water and salt. If it helps, you can titrate your dosage up.

I know it's hard to control your position when you are sleeping, but until you figure this out- maybe try to lie on your left side (like they recommend for pregnant women) to add the least stress to your heart, giving it the best chance to pump enough blood to your brain.

Lots of extra salt & water! Maybe florinef? Definitely see a doc- scary stuff

Hugs-

Julie

[s-pot]

Ah thanks so much Julie...sometimes just some guidance with all this stuff is enough to pick me up again. It gets wearing to keep trying to figure out whats going on!!

I have found i cannot tolerate much Midodrine, usually just one in the AM cos i get severe headaches but I just know my BP gets more unstable as the day goes on. So i will ask about florinef and attempt to increase water intake more. I enquired before about salt tablets but didnt get anywher with that! And i think i will head to my GP tomoro anyway and get some bloods taken, check potassium levels.

Defo will be bed tilting and lying on side for next while...dont want those seizure to get any more frequent!!

Ur responses are really appreciated this evening Julie Thanks a mil!

[s-pot]

just one more quick question!

If i was successful in getting my doctor to perscribe me florinef to see if it makes any difference would I havto stop the midodrine?? Can you take both these drugs for POTS or is it one or the other generally?

[juliegee]

I have no idea about whether or not you can combine the drugs. I hope others will chime in who have experience with this.

The way I understand it, midrodine works by vasoconstricting or tightening up blood vessels. So, whatever blood you have is propelled through the body more efficiently. Florinef (salt & water!) works by actually helping your body retain more water thereby actually boosting blood volume.

The symptoms you are describing sound very much like my son. He benefited tremendously from the florinef.

Here is a link to a great document from my son's doctor at Johns Hopkins. Every word is fabulous, Really. Every time I read it, I learn more. Near the end, is a description of the various meds used in OI and how they work. Print it & bring it to your doc. Might be helpful: http://www.cfids.org/webinar/cfsinfo2010.pdf

Feel better-

Julie

[potsgirl]

I know that a lot of doctors, mine included, prescribe both Florinef and Midodrine together. Unfortunately, I was unable to tolerate either one. I've heard that Midodrine really helps a lot of people, though. Just make sure that you start at a "baby dose" on any new drug if you're drug-sensitive like many of us seem to be.

Cheers,

Jana

[anna]

Just another thought as well, have you had sinus node problems checked out by your cardiologist?! A friend of my sisters was having issues with OI and had episodes of what looked like seizure activity followed by fainting, when she lay on her back. To cut long story short, she went to her NHS Dr.'s who sent her to consultants, that could not find anything wrong! normal EEG's heart ok! She kept having problems so she went private turned out she had some form of arrhythmia originating from her Sinus node that was triggered when she was on her back. She has had a pacemaker fitted that triggers in when this happens and she has been fine since. This happened when she was in her mid to late 30's.

Also I found this:

Both atrial and ventricular arrhythmias can produce transient neurologic symptoms by disrupting cerebral perfusion, but ventricular arrhythmias rarely result in seizures. In the absence of evidence of infarction, however, arrhythmia-induced convulsive syncope can be difficult to distinguish clinically from seizure.

(http://professionals.epilepsy.com/page/cardiac_arrhythmias.html)